AML didn't respond to Flag-Ida

FormerMember
FormerMember
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I'm looking for guidance from others with a similar diagnosis. My husband, age 51, was diagnosed with AML on 1/10/18. The docs immediately did an induction round of FLAG-Ida. My husband's bone marrow biopsy showed a reduction from 65% blasts to 48% blasts- a far cry from the 5% blasts needed to do a bone marrow transplant (stem cell transplant.) The doctors say he'll need the transplant because they say without it, he's leukemia will come back within a year. 

My husband was treated with another round of induction "MEC" and now we're waiting for the next bone marrow biopsy. We're terrified that this round of chemo won't make the 5% goal for a transplant to proceed.

Does this sound like any of your experiences? What was your journey and hopefully, survival story? I need support...

  • FormerMember
    FormerMember

    Hi There

    I'm so sorry you've had to join our AML club.  The club which none of us wanted to join, but circumstance dictated otherwise!


    I was diagnosed with AML in November 2016.  I had four courses of Chemo, two FLAGida, and two of high dose Cytarabine.  My MPN1 genetic marker didn't turn negative until the end of round three.  I was discharged at the end of April 2017, and am now getting on with life.......AML can be overcome!!  It's quite common not to go into remission on the first or second rounds.


    The hardest part of the long tough AML treatment road is the endless waiting to test results, and the not knowing.  If you read back through past posted, that's the continually recurring theme of posts, we want certainty, but we don't get it with AML.  if you can learn to live with often "Not knowing" that's a big part of the battle.


    I'm currently waiting for my last quarterly biopsy results.  I can either drive myself mad trying to second guess, or accept that I don't know, and get on with enjoying life.  I choose the latter!!


    Keep us posted, and never give up.


    Love and hugs


    Rog xx

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for sharing your experience. The waiting game is painful and I feel will continue as we've only just begun this journey. We have 2 young kids at home, ages 3 & 5, and not being able to see them is crushing to my husband. He has been in the hospital for 4 consecutive weeks. It would be nice if the hospital provided some opportunity for fresh air or a brief connection with the out of doors- being stuck inside is hard on a person's psychological state...

  • FormerMember
    FormerMember in reply to FormerMember

    My daughters were older. 13 and 17 when I was diagnosed. After the first round of chemo and isolation of about 30 days, I was allowed home for about a week before returning for the second round. For this and subsequent rounds I negotiated with my Consultant to go home in between chemo, returning each day for obs.  Once I became neutropenic, I was stuck in isolation at the hospital until the Neutrophils reappeared.  I used to face time the family daily, and As I was in Hospital over Christmas, my daughters propped their phone up on the mantelpiece so I could “Help” decorate the tree.

     

    Yes, it was really tough, but I took the attitude that if that was what I needed to go through to beat AML I would do it. It’s a long hard fight, but  together it can be beaten,

    Love and hugs


    Rog xx

  • FormerMember
    FormerMember in reply to FormerMember

    Rog,

    I'm sorry that you missed Christmas with you daughters. My husband missed our little one's 3rd birthday last Friday and will probably miss the 6 year old's birthday in March. We did as much as we could via FaceTime. It is heartbreaking not to be together but his constant medical care is much more important at this point.


    He has been diagnosed with pneumonia and is having a hard time breathing. The docs had him on one antibiotic last week and just switched him onto another antibiotic today. Do you remember how long it took for your "ANC" count to return to a point where the immune system started to work again?


    He's also been receiving blood & platelets on a regular basis but after the last 2 transfusions he had an allergic reaction. The first was to the platelets and developed as hives, the 2nd was to blood and was more like an intense rash.


    I'm trying to stay strong but I'm so scared to leave him in the evenings. I have to work to keep paying the bills and can't stay over night because of the kids. I'm so worried about losing him and about not being here if things start to get worse.


    Thanks for listening,

    Jamie

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jamie

    I really feel for you.  There's no doubt that beating AML is a long tough fight.  It's probably harder for the healthy partner, as you feel so helpless watching your husband in hospital.  You're trying to support him, look after children, and hold down a job!  Might your employer give you paid compassionate leave? or have you got friends, family, or neighbours that an help with childcare, shopping, cooking, cleaning etc?  You can't do everything by yourself.  Sometimes you just need to ask for help.  People often assume you want to soldier on, or don't like to interfere!  When I was in hospital for so long, I made my wife promise me that she would focus on our daughters and running the house (She also works).  I told her I'd be happier knowing she wasn't running herself ragged.  We face timed a lot, and she came to visit me about three times a week.



    Not sure what ANC count means.  If you mean when did my Neutrophils reappear after the Neutropenic (No immune system) stage.  That varied.  The shortest was 19 days after the last chemo, up to 29 days.  To then get to the magic 0.5 Neutrophil level which allows you home took another 3 to 7 days.


    I had quite a few temperature spikes while in hospital, which were treated with litre bags of anti biotics 24 hours a day for five days at a time.  Also had one bout of sepsis that managed to also infect my Hickman lines. Antibiotics also sorted that out.


    All you can do is take one day at a time, and try (I know this is really hard) to stay positive.


    And PLEASE PLEASE PLEASE shout for help from those around you.


    Keep us posted.


    Love and hugs


    Rog xx

     

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jamie

    I cannot offer you any help other than I feel your pain.  It is simply awful watching your partner go through it only for the end result not to meet your expectations.  My husband is currently in hospital after two failed chemo attempts and they are now trying Flag Ida.  From the start he has had a poor prognosis, he is 59.

    I have absolutely shite days when I can't cope with anything and better days when I only cry 4 or 5 times.  So much harder for you with two little ones at home but really,  ask for help.  If someone says 'is there anything you can do' say yes, could you spend an hour doing my ironing or I haven't had time for housework could you hoover for me.

    I have found that everyone around me feels totally useless and it actually helps them to feel that they are doing something, sometimes we just have to be humble.  I even asked a friend just to cook me dinner, I will call in eat my dinner and leave straight away and that's exactly what I did. 

    I gave up work as that was right for me but it does make money tight and when people say 'do you need any money', I say yes anything would help.  Family have put money in my account, friends pop round and give me £10 or £20.  It helps me and it helps them.

    Try not to go global with your thoughts as it's crucifying, just focus on what's happening today as that is all you can be certain of.

    Lastly I will try and take my own advice lol

    Be strong

    Jenny x

  • Hi 

    I am a similar boat - I didn’t go into remission after the induction chemo (my blasts were reduced by a third to 21% and were low to begin with but nasty cytogenetics). I also need a transplant but they won’t put me through one until they get close (ish) to remission. About to start Flag Ida after my baby is delivered very prematurely (was diagnosed at 15 weeks pregnant). 


    Not going into remission was worse than original diagnosis for me! BUT hang in there - they told me that it’s not entirely uncommon, and your husband did respond to an extent which is good. 


    Good luck for the next round. X 

  • Jamsn it is a hard hard hard slog for the partners too.  

    We have no kids together so that is a blessing as I can focus everything on him without having to get home to kids.  Financially it has been a nightmare but Macmillan are now trying to help us apply for benefits.   


    The only advice I can give is:  you are stronger than you think (yes it’s hard to believe but you are!).  


    What hospital is he in? 

     *Learning God is in control and every day holds the chance of another miracle.*

  • FormerMember
    FormerMember in reply to FD

    I read your original post the other day and was heartbroken to hear that you're going through this during a pregnancy. I have a 3 and 5 year old and know how hard it is to be pregnant and to be a mom. You're whole being is concerned with protecting your child and now you have to really focus on yourself more- it doesn't seem fair at all. Will your little one be in a NICU in the same hospital that you're at. Do you have family in town to be with you during all of this? I hope the FLAG-Ida works. You're starting at a much lower rate than my husband was. He went from 65% blasts to 48% on FLAG-Ida. If you're at 21% this should work. 

    I wish I could say something to help heal your pain. With parenting, I would often try to remember that "it won't be like this forever"- whatever "this" was, it will get easier with time and experience. I guess the same holds true for cancer... Enjoy your little one when you get to see him/her and know that life is long and there will be plenty of time to be present as a parent once your body is healed.


    Wishing you peace and health, and 10 boxes of tissues.

    XOXO


  • FormerMember
    FormerMember in reply to FormerMember

    I really sympathise with what you and your husband are going through.  My son was 4 months old when I went into hospital, and the hardest thing for me was not seeing him for weeks at a time.  I hope your husband gets a chance to get out soon - I agree, it is a huge psychological lift.  And just remember to be kind to yourself as well - I really felt it was much harder on my husband than it was on me.  He was absolutely amazing, but he was looking after our baby, self-employed and trying to keep his business together, and driving to hospital to see me every day.  It became clear he really needed a break, so in the end, as chemo and hospital stays etc. quickly became routine, he would have a few days' break at his parents' house.  I didn't see him or my son during those breaks (although I did speak to him), but it was also a bit of a relief for me, as I didn't feel the guilt for what he had to do for all of us, plus I knew he was getting some much needed rest.  I was surrounded by support, being in hospital, whereas he wasn't.  It was there, on offer from family and friends, but I think it is very hard to accept.  I read another post that said use the support - I think that is also really important.  People want to help, and although it is hard to say 'Yes, I would love your help,' I think it probably helps everyone if you can.  I have no basis for saying that, of course, having been in my hospital lodgings for the majority of the time, but I could see that people wanted to help my husband, and that he could have benefited from it, but that he rarely asked for it.   Anyway, there are no hard and fast rules - you have to feel your way a little bit, but it does become a sort of routine, and you will find a way through. I can obviously only speak for myself, but I felt safe and looked-after in hospital, and in the end it became a sort of nice place to be, if you can imagine that!  ALL the hospital staff were amazing and although it is very lonely sometimes, being in isolation - particularly when you can see other people outside and you long so much to be outside too - you're in the best place.  I took up needlework to try and deal with the boredom (needless to say, I never finished what I was doing the minute I was out of there!).  A nurse told me about a man who had a golf putter set, so he used to practise his putting to relieve his boredom.  It helps to try and find something to focus your mind on other things.  Also - and I cannot stress this enough - it is so important to think positive, probably for all of you.  The only time I wavered, due to a chance remark by a nurse, which shook my faith somewhat, I became very ill, and it was a struggle to regain my belief that I was going to get better.  I had never actually questioned it before.  It is now 8 years since I was diagnosed, and two years since I was completely discharged, and since then I have had another child - naturally - (which was so incredibly unlikely after IVF and chemo).  So good things DO happen.  And if it comes back - well, at least I have been given the opportunity to enjoy my family for a few more years.  I like to think I rarely think about it any more, but I do generally read these AML posts every day!